As a Person With a Chronic Disease, My Life is Often Isolated. Now We’re All in the Same Boat
in the race to health and hope, choosing patience is key
The sun is shining. It’s the start of an early spring, and the first band of sunlight of the day slips in through the crack of the curtains like warm silk. The open window brings a breeze, sharp and sweet, and the sounds of robins singing. I’ve been invited to a cook-out later.
But I can’t go out today.
The treatment knocks down and manages the neurological disease that, if not tempered, will continue to take over my body, my nervous system, my brain, my spine, and my life.
I have to stay inside, probably on the couch with minimal physical or cognitive exertion. Cooking will be limited to things that I won’t risk burning myself over – so dry toast or a container of almond butter. Maybe I’ll write a few paragraphs on my fledging novel or pen a blog post. I might paint another leaf on a watercolor I’ve been working on. Before noon, I’ll feed my cat and we will curl up on the couch with a stack of paperbacks or watch a movie. We will nap, always nap. Later, I’ll notice I’m out of laundry soap and it put it on a list as I can only get to the store once in the next six days. “Fragrance free” sits next to “cat kibble” like old friends – my lists are often the same on my shoestring budget. I’ll call my mother and we’ll chatter – not too long or I’ll get mentally exhausted or confused. Then I’ll take a lukewarm bath and climb into bed to watch reruns of “Gilmore Girls” while my cat chastises me with his eyes for shutting the window against the now cooling spring air. I’ll take the medications that ease the sharp pain in my head and my spastic body and the fuzzy vision in my left eye.
This is what many of my days look like.
This is my normal.
It’s just weeks until my next treatment. An Rx of sorts that pummels my already precarious immunity. Yes, I am young. Yes, I do look fine most days. But I have an underlying disease, a chronic condition, a sleeping beast, that puts me at high risk every single day amid a world of germs and risks. The treatment knocks down and manages the neurological disease that, if not tempered, will continue to take over my body, my nervous system, my brain, my spine, and my life. It takes it anyway. Piece by piece.
As a person with Multiple Sclerosis (MS) most of my life who has been treating it with an aggressive chemotherapy-type treatment the last seven years, I have found ways to live not just with the risk of getting sick with some random virus like the cold or flu, but to thrive with this kind of life.
The COVID-19 scare of today is frightening. Terrifying. Life-alternating. Suddenly, we are all sitting in the same boat, staring at each other from across the miles and uncertain what to do.
The COVID-19 scare of today is frightening. Terrifying. Life-alternating. Suddenly, we are all sitting in the same boat, staring at each other from across the miles and uncertain what to do. It is fearful to my best friend, who has elderly parents and a child who needs mouth surgery this week. It is scary to my grandma, who can’t get to her basic medical appointment this week as it’s too risky to go. It’s upsetting to my friends up north who can’t do their normal jobs, and must find ways to work at home and still meet their bills even when the Internet and cell reception is scarce. I see people going out wearing medical masks or ones they’ve made themselves. They get what they need at the gas station or grocery, and get home, and it unnerves them to not have access to what they are used to having.
MS puts me at the top of COVID-19’s hit list. I am immunocompromised. Yet I have to treat myself with preventative measures every day. Even meeting a friend for coffee in the warmth of Christmas season when flu is high, or in the summer when the heat throws my MS out of whack, I am at risk of germs and viruses that most people won’t even get a sniffle over. If I do go out, it’s often wearing a mask, and people look at me funny and wonder what’s wrong with me, my face, or why I’m limping or sometimes off balance.
I blend in now.
My normal means I always have a stash of ginger tea and ginger soda, of remade rice and paper goods. Canned soups and mashed potatoes. Paper and books and soaps I’m not allergic to. A generous supply of my prescription medications, meticulously organized.
I am most always isolated, but I am not alone. There are ways everyone can adapt to this lifestyle now, if only for awhile. For me, my online groups make me feel connected. The friends I do have often visit me when I can’t leave the house or they meet me where it is easiest for me to stay healthy and easily navigate. We do phone video talks with each other or groups and laugh at each others’ “at home outfits” and pets. I volunteer with the National MS Society and my local MS group – we mostly talk online but meet when conditions are safe to do so. I write contributing blog posts about being an author, an artist, a journalist, and a person with MS. I meet with art and novelist groups when I can. I walk in the woods and feed the birds and observe the deer. I see a dance instructor in Chippewa Falls who helps work with what my body can do, to keep it healthy and moving and maintain what abilities it does have. I wash my hands a lot, watch my diet, and am careful who and what I expose myself to, lest I risk my fragile health.
I am most always isolated, but I am not alone. There are ways everyone can adapt to this lifestyle now, if only for awhile.
After years and years of my immune-modulating medications, I am always on high alert. Something like the flu or a cold or COVID-19 could change the course of my MS. It could cause permanent disability, or it could even kill me. I’m not the only one up against this grim reality.
Today, so many of us are suddenly facing this same vulnerability.
We can all learn right now from these little caveats I have built into my life. We can’t meet all the demands of a functioning, normal society right now. We all have to step back to ensure that those of us with weaker immunity or those who have had more birthdays are safe. It’s a rough bump for everyone, financially and economically and emotionally and socially. Yet it is for the good of everyone that we simply lay low and wait. We need to be patient with each other and the world.
My boyfriend is unrelentingly kind and patient with me – even on the days when I am in pain and fussy and at wit’s end with the frustrations of the medical system or simply a disease that has no cure nor a predicable course from year to year, much less month to month or even day to day. A disease that will continue to advance, to worsen. He, my mother, my father, my best friend, my boyfriend’s family – do not have MS. Most of the time, they don’t have these isolations of having to gate themselves up. Yet they choose to spend time with me in my isolation or make sure when I’m around that my sensitive needs are navigated and not judged. I am new to the Chippewa Valley and I have already meet artists, writers, painters, and dancers willing to meet me where I’m at and include me even when it’s not face-to-face.
Patience. Let’s all choose each other.
It’s a rough bump for everyone, financially and economically and emotionally and socially. Yet it is for the good of everyone that we simply lay low and wait. We need to be patient with each other and the world.
Reach out. Call someone who may be struggling and have a 15-minute conversation about a memory, a recipe, a book, a hobby. Follow a dance video online and learn it. Call your aunt and ask her about that awesome old family photo on her mantle every Thanksgiving. Write a letter by hand, tell a story or give a nice poetry quote to whoever the recipient is. Go online and see if anyone needs help with something you are good at. Can you fix cars? Make a YouTube video. Can you do graphic arts? Start a blog and show some basic tips. That book series you loved? Go online and write some book reviews for those authors. Like some art you saw downtown? Give a shoutout at the business’s social media page. Do you know basic math skills or other languages? Teach online. Everyone is hungry for human connection right now. We are so used to that connection being physical, but the truth is, it’s available in many forms.
When this passes, and a grip is made around COVID-19, I hope we change our outlook as we start to stream back to work and theaters and shops and eateries. I hope we change from a society that prioritizes a good worker as a person who always physically shows up and runs around until they are exhausted, mentally and physically. I hope, above all else, that we all see and respect each other as valued lives and beings. Because when we embrace that everyone has varying degrees of abilities – physical and cognitive – we can always find a way through.
Abigail Bostwick is a writer and novelist in the Chippewa Valley.